Incorporating religious and cultural background: Patient informed consent in the era of acellular dermal matrix breast reconstruction
J.A. Foppiani, E. Kim, K. Beltran, A. Hernandez Alvarez, I. Taritsa, M.J. Escobar-Domingo, D. Lee, K.A. Schuster, S. Terkonda, S.J. Lin, O. Ho
ESMO Open, May 2024; Volume 9, Supplement 4
Open Access
Background
Acellular Dermal Matrices (ADMs) have become an integral part of breast reconstruction. An additional level of informed consent may hinge on personal and cultural beliefs, especially concerning the source matrix. This study seeks to evaluate socio-cultural factors influencing patient decisions on ADM use, with the end goal of enhancing practice through better-informed consent and comprehension of patient values.
Methods
A survey of adult women in the U.S. and India was conducted via Amazon Mechanical Turk. Chi-squared tests were used to compare preferences across dietary and religious groups.
Results
645 complete responses were analyzed, with 12.2% from India and 87.8% from the USA. Predominantly, respondents were White (68.2%) or Asian (26.2%), with major religious affiliations being Christianity (68.4%) and Hinduism (23.7%). The most common dietary preferences were Vegetarian (36.2%), Omnivorous (27.9%), and Vegan (21.3%). Upon disclosing the composition of ADMs, 49 (6.5%) individuals changed their answers and opted against Human Cadaveric ADM; 82 (10.8%) against Bovine-derived ADM; 101 (13.3%) against Porcine-derived ADM; and 73 (9.6%) against Ovine-derived ADM. Both religion and diet type significantly impacted individuals’ decisions to forgo ADM usage upon understanding its composition (P <0.001), and also notably influenced their choices of ADM types (P = 0.024).
Conclusions
Disclosing ADM’s origin significantly impacted patient choices, and in some cases, shifted the patient’s opinion of potential choice. Thorough counseling of surgical preferences is a crucial component of patient care. The findings advocate for the importance of culturally sensitive discussions in improving healthcare equity in our diverse society.

Editor’s note: ESMO Open is published by the European Society for Medical Oncology.

Please refer to the editors note regarding ‘Relational, Culturally-Conditioned, Decolonized Consent’ here.

Consent-as-Method: Capacity to Consent of Cognitively Disabled People and Research Ethics Review
Hannah Quinn, Rebecca-Eli M. Long
Canadian Journal of Disability Studies, 22 April 2024
Abstract
Informed consent is a core ethical principle informing research conduct. Yet, normative consent culture–often grounded in ableist understandings of capacity, rationality, and independence– exclude people with cognitive disabilities. The adjudication of consent capacity in research can be a source of harm, requiring researchers to enact lateral ableism against research participants and, potentially, themselves. As anthropologists conducting ethnographic research with intellectually and developmentally disabled participants in Canada and the U.S., we argue for the creation of an anti-ableist consent culture in the context of research. In exploring alternative ways of doing consent, we turn to the etymology of “feeling-with”–the collaborative, multi-sensory, and embodyminded experience of giving, getting, and living consent–as this can inform more ethical and anti-ableist notions of consent. We propose “consent-as-method” as part of a larger conversation about the methodological challenges and potentials of doing research as and with people with non-normative bodyminds. Drawing on our research and lived experiences of cognitive ableism, we theorize consent practices that consider disabled people’s felt knowledges of denial of consent capacity and coercion to inform anti-ableist, relational ways of doing consent. We focus on capacity because it structures the kinds of bodyminds that are seen as capable of being consenting subjects. We build on existing scholarship that considers how critically engaging with disability as a lived experience and orientation fundamentally crips our methodological and ethical commitments. Attending to consent capacity through consent-as-method treats consent as not only a means to an end but as an anti-ableist research ethic.

The importance of global bioethics to paediatric health care
Viewpoint
Karel-Bart Celie, Joseph W Mocharnuk, Ulrick S Kanmounye, Ruben Ayala,Tahmina Banu, Kokila Lakhoo
Lancet Child & Adolescent Health, 23 February 2024
Summary
The paradigm of values adopted by the global health community has a palpable, albeit often unseen, impact on patient health care. In this Viewpoint, we investigate an inherent tension in the core values of medical ethics and clinical practice that could explain why paediatric health care faces resource constraints despite compelling economic and societal imperatives to prioritise child health and wellbeing. The dominant narrative in the philosophy of medicine tends to disproportionately underscore values of independence and self-determination, which becomes problematic in the context of paediatric patients, who by their very nature epitomise vulnerability and dependence. A double-jeopardy situation arises when disadvantaged children see their inherent dependence leveraged against them. We illustrate this predicament through specific examples relating to rights and obligations and to autonomy. Alternative value perspectives—communitarianism and relational autonomy—might offer more robust protection for vulnerable children. A shift away from the dominant narrative towards a more explicit and inclusive discussion of values is necessary. Such a shift requires giving a legitimate platform to diverse perspectives, with the presumption that collective moral progress is possible; this endeavour is embodied by global bioethics. Successful implementation of global bioethics, in turn, hinges on close collaboration between practicing clinicians and bioethicists. Taking global bioethics seriously and actively pursuing collaboration could help the global health community achieve more equitable health care.

A cultural-historical exploration of relational ethics in research involving children
Gloria Quinones, Niina Rutanen, Yaiza Lucas Revilla
Learning, Culture and Social Interaction, October 2023
Abstract
Participatory studies involving children are a growing topic of debate concerning research on early childhood education and care (ECEC). Developments in ethnographic methods and the use of video recordings to collect data have raised new challenges for researchers who study children regarding such issues as formal procedures for informed consent and obtaining children’s assent to research encounters. A growing number of studies have explored children’s and researchers’ relationships, as well as the ethical aspects of research encounters. We contribute to this discussion by adopting a cultural-historical (wholeness) approach to research that involves children, partnering as researchers with a child participant. By using a cultural-historical approach, we analyzed a critical incident that involved a child’s assent and dissent process through dynamic motive orientations. We focused on the importance of considering dynamic motive orientation as researchers navigate new ethical challenges. Our findings reveal that adopting a wholeness approach requires researchers to serve as activity partners, reflecting on and recalibrating their own motives and centering child participants in the research process.